A Letter From Your Friend With Fibromyalgia

I’ve known something was wrong as deep inside myself as my bones are. It ran through my blood, infiltrated my organs. Lived between the strands of my hair and whispered in my ear when I moved. “Wait,” it said. “You’ll see.”

I felt it like bread rising. Something bubbled inside me, fizzing languidly, waiting to burst forth out of the pan that couldn’t hold me, dripping down the sides of the oven and burning, burning on the coals below.

The grasping fingers in my brain reach back, back, back. Can I blame my propensity for fainting during church as a child? I always got too hot at holidays. I had to take off my Easter hat, the dead fox someone wrapped around my neck to make me a shepherd, sit in the cool darkness and sip water from a styrofoam cup while the congregation rose and fell to “Alleluia” and “Peace Be With You.”

Or the time I passed out on the street, passed out cold and didn’t even wake up in time to see firemen hosing my blood off Pennsylvania Avenue. That’s one of my biggest regrets. It’s not a sight a person gets to see twice. All the king’s horses and all the king’s men, all the best Washington had to offer, couldn’t put the pieces together, and sent me on my way with caution and a head shake that grew as familiar as my own.

What I mean is, there isn’t an answer as much as there are a thousand, as much as I can’t list my medical history because my history is that of a war-torn country whose records are scattered and burned. Because this puzzle is missing pieces, or they’re shaped just a little bit wrong, like someone cut them with an X-Acto knife without directions.

“I don’t know.”

My chart must be riddled with question marks, but the pen always moves too fast for my one-word answers. I always wonder what they’re saying, if I could learn more about myself, the skin-bound vessel that barely contains me, if I could just read my electronic medical records.

The story is seven years long if I try to recount it all, but it’s a boring story, the kind people tell at parties that trails off into a glass of iced-down chardonnay. I’m more of an aged Bordeaux that way, cutting through the heaviest meal with a single stroke: I’m tired of skirting the question.

I have fibromyalgia, a disease that crept beneath my skin sometime during the past decade and lay in wait as I learned to use the body it invaded, as stealthily as a Trojan horse and as devastating as a nuclear bomb.

The disease is as individual as we are, which makes it hard to find, hard to pin down and impossible to eradicate. It’s a termite of the skin, a shrapnel bullet without a target, so it winds its way throughout the body, looking for a new place to strike every day for years. Forever.

Some days it turns my eyelids into lead, a noxious mercurial metal that weighs down my limbs and settles in my chest like an anchor. Other days it shoots electricity through my fingers and toes, the soles of my feet and palms of my hands. It turns my neck into a lightning rod, and I’m electrified with something too bright to be called pain, the kind of light that vaporizes cities in cartoons meant to incite Cold War-era fear.

Still other times, it’s a dull, persistent ache that nestles beneath my kneecaps, in the crooks of my elbows and wrists, in joints I didn’t know existed until they awoke to the pain that’s so variant I ache for a synonym, a word that describes it more clearly.

Most times, it’s a cocktail of all three.

I awake each morning and take inventory of my parts, like a mechanic would a car that didn’t belong to him and didn’t matter except in abstract substance. I ask myself which pieces will rebel against me, or if they’ve coordinated their attack. My body is a like a weathervane in that way. Some days dawn bright and clear, a chance of an afternoon shower if I decide to walk too far or stretch my boundaries past their rubber band breaking points. Some days are thunderstorms. Others, tornados.

There’s research on the topic, of course. Brochures with furrowed brows and smiling faces that promise management but no solutions. There are Wikipedia pages and online support groups. But we have no Susan G. Komen. We have no races, no days of awareness. No one turns bridges purple for us, not yet.

“We need better drugs,” my rheumatologist told me with that familiar shrug, last time I asked him for another medication, a better one, one that would work at last. “And for that we need research. But it takes time.”

For the almost three years since my diagnosis, I have kept it close to my often-aching chest. I’ve released the information like a holy grail, and by doing so, have given it a power far greater than it deserves. I’ve let it wage a fear campaign freely, without countering with awareness or support.

I have fibromyalgia, something that defines my motions, but not my personhood. It challenges me to act against a force even the greatest minds in medicine don’t understand. I didn’t choose this cause, but we take up the swords we’ve been handed.

I want to work toward awareness and to encourage research into something so insidious it attacks without warning or cause. Let’s spread information together, in the hopes that it reaches the right ears. Help me put the puzzle pieces together. Help me keep them there, too.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.